Myalgic Encephalomyelitis (ME)

Resisting Attempts to Silence #PwME

Methods of Silencing Dissent to Control a Specific Agenda

Globally, government agencies and officials as well as private sector companies, and organizations use known astroturfing and silencing methods to achieve their intended goals. They use media to spread propaganda to manipulate opinions. They employ specific tactics to squash dissent to institute their desired agenda.

In the myalgic encephalomyelitis (ME) community, this method of controlling a specific intention is used by government health agencies, medical interest groups, and those supporting them. They advance the false narrative that ME is not a distinct disease but, a collection of fatiguing conditions. They also perpetuate the myth that ME is imagined – a functional somatic condition.

This government deceit harms people with ME (pwME). The underhanded conflation of ME with chronic fatigue syndrome (CFS), chronic fatigue (CF), and psychosomatic conditions results in falsely depicting the disease as a benign condition, possibly just in the mind of the patients. The medical community has therefore in the main dismissed this ‘vague condition,’ neglecting to care or study it.

Those whose interest lies in perpetuating this myth because of financial benefits or other motives use established methods to advance their biased goals by spreading misinformation and falsely accusing those who dare to speak out about the malfeasance.

Methods of Silencing a Group of Activists

Ron Duchin, research analyst at Mongoven, Biscoe & Duchin Inc., in Washington DC,created and utilized specific techniques to break up activists groups who were fighting for social justice such as environmental groups, animal rights groups and consumer affairs groups. His famous legacy was breaking up civil rights activists groups fighting the tobacco industry. He later used this plan advising other industry giants in how to fight any dissent which was adversely affecting their objectives.

Duchin explained that activists fall into four categories: radicals, opportunists, idealists and realists, and that a three-step strategy was needed to bring them down.

First, you isolate the radicals; those who are vocal in their desire to change the corrupt system and promote social justice. Then use methods of character assassination to discredit them – such as exaggerations, lies, trumped up charges to marginalize them.

Second, you carefully cultivate the idealists; those who are quieter and are not as direct in their methods and objectives as the radicals. You do this by gently persuading them that their advocacy has negative consequences for some groups, thus transforming them into realists.

Finally, you co-optthe realists (the pragmatics willing to work within the system) into compromise. “The realists should always receive the highest priority in any strategy dealing with a public policy issue . . . If your industry can successfully bring about these relationships, the credibility of the radicals will be lost, and opportunists can be counted on to share in the final policy solution.” Opportunists, those who are motivated by power, success, or a sense of their celebrity, will be satisfied merely by a sense of partial victory.

Astroturfing Methods to Manipulate and Control an Agenda

What is astroturfing? (Astroturf and manipulation of media messages by Sharyl Attkisson – see video here)

Astroturfing is the attempt to create an impression of widespread grassroots support for a policy, individual, or product, where little such support exists. Multiple online identities and fake pressure groups are used to mislead the public into believing that the position of the astroturfer is the commonly held view. The goal is to neutralize any opposition.

Tactics:

give the impression that there is widespread support for or against an agenda when there’s not

seek to manipulate and change opinions by making some feel like outliers when they’re not

seek to malign those who openly disagree with the intended view

attack those who publish articles they don’t like or whistleblowers who tell the truth

intentionally shove so much confusing and conflicting information into the mix that you are left to throw up your hands and disregard all of it, including the truth

How to Recognize Signs of Propaganda and Astroturfing

use of inflammatory language such as crank, quack, nutty, lies, paranoid, pseudo and conspiracy theorists

personal attacks on individuals and organizations surrounding an issue rather than addressing the facts

reserve all public skepticism for those exposing wrongdoingrather than the wrongdoers

instead of questioning authority, question those who question authority.

Methods of controlling an agenda and minimizing dissent in the ME Community

Defining the disease with government-produced vague criteria which include many who suffer from fatiguing, psychiatric, psychological and other conditions, – with the aim of burying the neuroimmune disease ME. Then, accuse #pwME of somaticizing and catastrophizing.

Quieting criticism by spreading rumors that the patients are an “angry and crazy” group – rumors that are never substantiated with evidence – to legitimize their own biased objectives and to dissuade clinicians and researchers from treating patients and studying the disease.

Media articles that miseducate about the disease and misrepresent the community such as this article in the Guardian titled “Chronic fatigue syndrome researchers face death threats from militants.” The author uses classic astroturfing methods when writing: “In addition, activists – who attack scientists who suggest the syndrome has any kind of psychological association – have bombarded researchers with freedom of information requests, made rounds of complaints to university ethical committees about scientists’ behaviour, and sent letters falsely alleging that individual scientists are in the pay of drug and insurance companies.” Notice the inflammatory language: “attack” – for disagreeing; “bombarded” – for requesting information from the government as if that is a terrorist act; “falsely alleging” – when there is actual evidence.

Mis-educating by highlighting the ‘fatigue’ element of the disease (even though it is just one symptom of many in this systemic disease). Choosing to educate the misconception that this is a condition of the mind even though science proves otherwise. Encouraging harmful treatments such as GET and CBT which still appear on CDC’s website (see toolkit and guide to medical professionals) Educating with overly broad, inaccurate criteria as in the revised CDC website promoting the IOM criteria. (See “CDC’s Website Revision is No Reason for Celebration”)

Marginalizing or disparaging clinicians and researchers who show interest in treating or studying the disease, by denying their applications for government funding and refusing their requests to serve on federal committees. Dr. Jose Montoya, a professor at Stanford University and one of the leading ME clinicians and researchers today, told The Guardianwhat his mentor told him when starting his work with ME patients: “You are committing academic suicide. You’re turning your career into a mess.”

Giving the illusion that patients have a platform for input and engagement when in reality their voice is consistently ignored. HHS creates puppet committees and working groups, such as the Chronic Fatigue Syndrome Advisory Committee (CFSAC) and various working groups yet, very few (if any) of their members’ recommendations are implemented. Stakeholders’ oral and written testimonies to CFSAC are sought but readily ignored and dismissed.

Threatening those who dare to ask critical questions – as in the threat of eviction of three CFSAC voting members – two of which went public – Eileen Holderman (patient advocate)and Dr. Mary Ann Fletcher (scientist) (See video here, letter from advocates calling for an investigation here).

Rewarding those who support the biased government agenda by giving them preferential treatments, whether with a coveted seat at the table or with funding opportunity perks. Some in the co-opted interest groups aid the government with attempts to silence opposing voices by telling them not to complain and to ignore the malfeasance.

Rejecting grant applications to fund biomedical research, in deference to studies using a psychological/psychiatric view. World renown ME investigators, such as Drs. Ronald Davis, Ian Lipkin, Nancy Klimas, Jose Montoya, Mark Davis and Robert Naviaux have each received rejections for their research grant applications from NIH. Yet, funding studies by Psychologist Fred Friedberg, Ph.D. such as home-based management are accepted (See study).

As currently seen with the University of Bristol Professor Esther Crawley’s upcoming TEDx talk “Dare to Disrupt”, the desire by these groups to propagate their false narrative about ME is powerful. In her write up on TEDex website, Crawley writes: “I dare to disrupt because …We need to disrupt views of this illness.Those who are ill with CFS/ME do not have a voice – they are too unwell. We need to provide their voice, and we need to speak up about this illness. Because we, as a community, as a society, as friends, as neighbors and as parents should look after children who suffer.”

Yet, the ME community did not choose Crawley to be their voice. The opposite is true. Esther Crawley is a proponent of the unscientific GET, CBT, and lightning process treatments in children with ME and is involved in studies using these harmful therapies. She was an author on a study which promoted the diagnosis of pervasive refusal syndrome (PRS) for children with severe ME. UK patients and advocates have spoken out against these studies taking place because of their potential for harm. Crawley fought back by using the astroturfing method of character assassination. She spread allegations that she was being attacked and harassed by ME patients. These charges were debunked by Tyme Trust who obtained FOI requests from the University which revealed that no reports of harassment were made (See Adam Lowe’s article, “Esther Crawley claims harassment, university has no record”).

The nefarious methods of control by those with a false narrative about myalgic encephalomyelitis and their supporters will continue. To prevent the disappearing of ME, we need to recognize and expose these treacherous acts. Our advocacy efforts should focus on demanding the use of proper criteria for diagnostic and research purposes ( ME-ICC criteria and ME-ICC Questionnaire), and for appropriate NIH funding ($250mil a year in the US) to effectuate impactful studies leading to an acceptable biomarker as well as FDA approved treatments for #pwME.

Thanks for this info. It applies to ALL propaganda, especially in written form, being promoted in our society today. Every person should be educated about these techniques used to influence our opinions and actions. (Would be great in a H.S. or college course)
Anyway, as a person disabled by Post Polio Syndrome ( PPS or ME or CFS…whatever) for decades I am SO interested in staying informed about any progress (or lack thereof) regarding the diagnoses and treatment of this illness.

Gabby, this really is excellent! I don’t think I have read a better expose of the sophisticated, devious methods used to deny people with ME a voice or treatment. It is brilliantly written- very clear, extremely informative- I have learned a great deal from reading it. Greg Crowhurstxx